Hepatitis C

lucygooseMarch 23, 2006

Hi All!!

I am not sure where to start....I guess just come out with it....I have been diagnosed with Hepatitis C....It is devastating...I am a 50 almost 51 year old female, that in the early 70's messed with drugs....for about 2 years....It is a past that I don't really want to even think about....But, that is probably where I got it....I have Googled the net for days, and man, I am soooo depressed about all this....What took me to the doc, was my stomach has been bloated, but I was passing that off to the middle age spread cause I stopped the monthlys last march...I just had back surgery (and it went very well) about 7 weeks ago....boy did the bellie bloat after that.....I mentioned it to the back doc, and he said to mention it to my reg doc.....I was like sure, I go in and tell him that my bellie hurts sometimes, and it's bloated and another thing that I notice since last summer was I think I have this odor.....It's so hard to explain, but I swear it reminded me of maybe something hormonal or something...hard to pin...I was doing the hot flashes last year then is when that started...I was like, shoot this change of life stuff with hormones is icky....LOL....then I had my back surgery, and it got worse....I was telling a girlfriend...and she was like, just go with your gut feelings, and go back to the doc...so I did...He took blood, and my liver enzymes were high, so then he checked it with other tests and it came back Hep C.....I was in shock....Now I just had the CT of my liver, bladder, and spleen.....more blood work, and go to a specialist next month. The specialist's nurse called and when I was talking to her, she know what I was talking about with the odor. She said that is when the liver isn't working properly....Just great.....From what I have found on the net, this is the new emerging epidemic.It bids its time, causing no symptoms for decades. They also say that about 3 times as many people are carrying hep C virus as are infected with HIV. I have told no one in the family.....not my parents or anyone around here...YET, till I find out just exactly where I stand with it...The treatment is very hard on one, not to mention the cancer, or liver failure that can occur.....Does anyone here know of anyone who took the treatments? I guess I am just venting....Boy, nothing like the old saying that your past catches up with you.....There is such a stigma with this one, too....News Weeks had an article on it this month even.....I have a feeling I will have a very long road to tow here shortly....

I thank you for listening...I know that Naomi Judd had this, and did get cured....I have to have faith, and right now, I am not dealing with this news well....but once I find out just were I am with it to be exact, and get going on treatment of some kind, I will be fighting....

Again, Thank-You

LucyGoose :-)

Here is a link that might be useful: News Week Article

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I know someone who did do the interferon treatments....took 6 months of constantly feeling on the edge of getting the flu, but he is now free of hep C. That was a year ago December that he was through with the treatments.
Get with it!!...It's a lot better than the alternative! Chemo for cancer is a lot harder on you than the interferon treatment for Hep C.
Linda C

    Bookmark   March 23, 2006 at 9:39AM
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Well, Lucy, I can understand how terrible you feel about this development. I know a young mother who went through the treatment, and she's doing quite well. You do have a long road to tow, but you can do it.

By the way, 50 is not so old. LOL! I'm sorry for your trouble and your low spirits. It's natural when a person discovers illness. I know I'd be the same, but I encourage you to be brave and positive, and go forward with the treatment. Can you keep us posted here on how it goes?

    Bookmark   March 23, 2006 at 10:10AM
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Thanks so much for posting!!

I am right now waiting for the doc to call me on the CT report and the extra blood work he did on Friday......I am just devestaed.....crying all morning because I looked at the films of the CT today.....I might not be trained to read them, but I see a liver with tons of black blotchs on it....But won't know more till I here from him, I guess....this is my regular doc that will be calling me.....the specialist can't see me till april 13th, but after seeing this, I wasn't seen NOW!!! I guess this bloated stomach I have had and all was not female stuff....Man, I am just sick.....Once I find out were I stand, I will be strong and fight, but this not knowing if I have the advanced hep C problems that hep C causes is killing me...it's bad enough to fight the hep C, but if I have the liver cancer already.....

Okay, shutting up......thank-you so much for letting me vent....

LucyGoose :-)

    Bookmark   March 23, 2006 at 11:44AM
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You are really in a bad emotional state now, but it's certainly understandable. Go ahead and cry all you need to. Also treat yourself right, take a hot bath, buy a book you want to read, pursue hobbies you enjoy, do a manicure.

It is so frustrating to have to wait for doctor's appointments when you need to see them. I had the same experience recently, waiting 2 months. You could call the specialists office and ask very politely if they could put you on a list to get in earlier in case of a cancellation, or ask if it would be better if you just called once a week to see if there have been any cancellations. Just tell them you are so worried and anxious about the whole thing. They might tell you to go fly a kite, but it might be worth asking.

Take care.

    Bookmark   March 23, 2006 at 12:33PM
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Well, I have good news......They got back to me on my CT scan.....my live is normal, no lesions and looks, they said, unremarkable!!!! The doc's nurse got back after 2 phone calls.....also that there is a 1 centimeter of soft tissue on the left adrenal gland.....whatever THAT is....she said he has to get with the radioligest and might even want another CT scan.....but I am feeling lots better about the liver....In the blood work I guess it showed that I am post menopausal so she said she had hear of the smell thing with that....I don't know....but I am so much better if the liver isn't damaged to treat this hep C

Thanks so much for listening....my appointment with the specialist is april 13th.....I will keep you posted. Huggs!

LucyGoose :-)

    Bookmark   March 23, 2006 at 4:17PM
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Now I am having a MRI on monday just to make sure that nothing is wrong with that gland....

    Bookmark   March 23, 2006 at 7:33PM
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Well things aren't looking soooo bad now. That's good.

    Bookmark   March 24, 2006 at 12:01AM
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Very glad the news has been good so far.

My best friend's husband has Hep C. He doesn't know how he got it, unless it was from a tattoo he got years ago, or maybe when he pulled a car wreck victim out of the car and got the blood all over him. He is taking part in a clinical study at UTMB in Galveston. The treatment is free. He is doing very well with it.

    Bookmark   April 15, 2006 at 1:36AM
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Well, boy oh boy have I been doing the research.....I did see the specialist and he is doing a liver biopsy on me this Thursday....then he wants to start treatment of interferon and ribavirin. But I am not so sure of that.....All this is mind boggling....I did start taking Milk Thistle, Liquid Garlic (Kryolic), Thymus Extract, and a multi with NO iron.....It is a start......I also will be changing my eating habits big time....No red meat for sure.....sugars, fats...This was not what the doctor ordered, but what I have found out reading....

Marilyn, what kind of treatment is your friend doing? i am glad he is doing well!!

Thanks everyone!!

Lucy, who is still overwhelmed with all this....

    Bookmark   April 17, 2006 at 7:34PM
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Good, Lucy. That's the right attitude! :-)

    Bookmark   April 17, 2006 at 9:19PM
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Well, I had the biopsy on thursday.....saturday the doctor who did it called me to say that the pathology is saying they got kidney instead of liver.....he says he has done lots and this has never happened....The whole thing is unbelievable....what would you do besides not paying for that one......The doctor who ordered it called me yesterday (monday) saying that he talked to both the doc and pathology and they are both excellent he says........whatever......Now I have to have it done again.......I myself, want to know where my liver stands.....

So, beside taking the Milk Thistle I went and bough this also.....Oh, I mentioned to my gastro about the Milk Thistle, and he didn't seem to know much....So below is what I am taking now....

Multi......TwinLab.....Daily One Caps....no iron...
Solaray.....Super Bio C Buffered....Timed release...it's what I had already 500 mg caps with the bioflavonoids and goodies...
Kyolic liquid garlic.....it comes with it's own capsules.....Good stuff...LOL
Milk Thistle
Thymus extract
Himalaya....Liver Care...(Liv52)
Oil of Oregano
Alpha Lipoic Acid 250 mg
Paul Stamets Mycro Medicinals......"Host Defense" by New Chapter....
I also bough Cats Claw, but after getting it home, it says on the bottle to not take it *with* thymus....so I didn't open it and start taking it.....Do you have opinions about that? I think the thymus is a must, (but tell me what YOU think, too).....

Again...Thanks for listening!

    Bookmark   April 25, 2006 at 3:59PM
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Next biopsy is May 4th.....Next thursday.....lets hope they get the right organ this time.....

    Bookmark   April 27, 2006 at 10:27PM
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Gee that was too bad about the biopsy. Once is bad enough, but twice!! Sheesh.

Lucy you are taking a lot of medications, I assume self-prescribed. Do you somehow know the interactions of these all combined? Your doctor(s) probably won't know much about them, but I wonder if you shared what you are taking. I think it would be wise. Honestly, I don't know a thing about any of themm but it seems like quite a bit.

Thanks for keeping us posted. Good luck next Thurs. Tell 'em to get it right this time! :-)

    Bookmark   April 28, 2006 at 9:36PM
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I know, I hope that this isn't some stupid omen or something.....LOL

I *is* a lot of vitamins and herbs, but then is isn't. I have always taken supplements, so the multi, vit C, B- complex (which I forgot to mention) is all normal even the garlic on and off over the years....it's just that Milk Thistle, and the other things.....I did tell my doc about the Milk Thistle, and he did hear about it lowering numbers....but I am sure he has had no schooling or training in nutrition....When I was on the phone today with the hospital about this next try at a biopsy, I told her everything I was taking.....but I will be stopping it as of today.....I don't know if any of it makes you bleed and such....

Thanks everyone!!

    Bookmark   April 28, 2006 at 11:26PM
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Hello Everyone!!

Well, a lot has happened.....I did have my second biopsy......DH was in the hospital with pneumonia.....he is still not doing that great and has to go back top the lung specialist next week.....He is not back to work, either...But my liver biopsy was really good.....They go by numbers of 1-4......4 being the worst.......For inflammation, I am a 1 and for fibrosis I am a 0 (zero) which is excellent!! So, I will not be doing anything too soon until DH is out of the woods anyway....But I will have to do something sometime.....Hep C does not just go away.....

Thank you for listening!!

    Bookmark   May 17, 2006 at 7:51PM
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Lucy, that is the best news!! I've been wondering about you. Gosh it's tough with both you and DH haveing health problems at the same time, isn't it? Well, be sure to follow up on your own treatment on a timely basis. Don't just let it go. Since you are in such good shape, pehaps the treatment will work very well.

Thanks for letting us know.


    Bookmark   May 17, 2006 at 8:54PM
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I am hepatitis patient. As i was browsing the web I have gone through one article about hepatitis c treatments and its benefits., Does Hepatitis c treatment can cause advantages and disadvantages, totally confused about this You can find the article here:

Here is a link that might be useful: About Hepatitis

    Bookmark   March 25, 2007 at 2:06PM
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Hi Steve!

Well it has been a year since I was first dianosed....I am much calmer....Have not been taking all those vitamins for a long while.....I am lucky if I get my vitamin C and B complex in me....LOL...I really should be taking the milk thistle....
Hope your doing well.....:-)

    Bookmark   March 25, 2007 at 9:05PM
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My DH has gone through the treatment 2xs and they didnt work for his type Hep C. He is very healthy though and all his test results have remained in the safe levels. Hes been living with Hep C for approx 25 yrs. IMHO and in his drs opinion a healthy life style has been the greatest contributor to his health. No he does not do the herb and vit thing but eats right,gets plenty of exercise(via his job),gets his rest and most of all avoids all booze and drugs including some otc pain meds.

    Bookmark   March 28, 2007 at 11:13AM
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Hi Lucy, I'm glad to hear that you're doing better since your diagnosis a year ago. I thought I'd pass along some information to you and to anyone who may read this because you may find it helpful . . . there is an experimental treatment out that is still in the clinical trial phase, but has shown promising results so far. It is known as telaprevir (VX950) and it is an HCV protease inhibitor, which basically destroys the enzymes that are essential for the virus to replicate. I've attached the link, so maybe you can see if there are any trials in your area and if you meet criteria to be in the studies. Good luck!

Here is a link that might be useful: Vertex Pharmaceuticals

    Bookmark   April 6, 2007 at 5:34PM
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Hi Lucy: I just stumbled upon this site, who would've thought a "Health" site would be found on GardenWeb? [grin] I'm a liver transplant survivor for 18 years, had hepatitis, CMV, meningitis, just about every other "itis" you can think of! Still kicking.

I support your searches for health, but must also warn you that the alternative medicine world is completely unregulated. Be very careful of the brands of alt meds that you use, be sure they are reputable. Nobody checks to be sure that they contain the correct amounts of silymarin (in milk thistle) for example. One thing that I found to be very helpful for the liver is a vegetarian diet. I saw that you were avoiding red meat, which is a good start, now I challenge you to give up all meat, fish, poultry. It's not that hard to do, and just remember that you're not giving up anything ... you're saving your life!

I good site to check is www.hepatitisneighborhood.com, as it has many blogs and lots of good information.

I did the interferon treatment (ribavirin hadn't been invented when I had hepatitis). It was hard, but I got through it, kept my job, hobbies, etc.

There is a good liver transplant blog at TRNSPLNT@WUVMD.WUSTL.EDU You don't have to login, just "lurk" for a while to get the feel of the group. Very supportive and informative.

Good luck with your treatments. What has always helped me is the thought that plenty of people have gone through this and they're fine.


    Bookmark   April 7, 2007 at 11:12AM
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Thanks you guys!! I will for sure check out the links. I tell you, ever since I turned 50, stuff is happening....LOL....I will be 52 next month.....NOW, my doctor says I have fibromyalgia....In fact, I got a bit crabbie with him.....He is just my GP doctor that I have to go through first....I was telling him I do not feel good, and it's like the bones hurt to press on.....you know that bone on your elbow or the heals of my hands, my feet......it is just strange.....worse when you get up in the morning....anyway, he got crabbie saying...*look at how thick you folder is* That in it's self got me real mad......I also itch...it's like these *things* I would not call them sores, but for lack of a better word, they itch.....soooooo he puts me on anti-biotics for a month.....I did take them and nothing changes......I ask if it's okay for the liver, and he is like.....Yes......My thyroid changed 50% higher they said, but then when I asked about it he says it's fine....I wanted to know what would make it jump that high since it has been the same low dose for years.....He told me to come back in a month after the medican.....well I have not....I do not want to see him again.....Oh, now I am getting ahead of my self.....He writes on my copy of the receipt.....fibromyalgia...I only noticed it days later when I was looking at it...Gee thanks for telling me anything....so I have just been reading up on it and it does sound like me....but man, that AND the Hep? Sheesh.,......I am to busy to have all that crap.....LOL....I love gardening and just being active....I know I am tired, but who isn't I say...LOL.....

Oh well.....life goes on, and thanks a lot for listening!!!!

LucyGoose :-)

    Bookmark   April 15, 2007 at 6:21PM
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Keys for patients with liver disease are:
1) To find the treatment that suitable for your disease condition.
2) To believe there really a treatment in the world accorded with your need.

Some helpful info may be found in the site http://www.liver-health.info/
Hope everyone has a healthy liver.

Here is a link that might be useful: liver disease

    Bookmark   July 15, 2008 at 3:11AM
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